Please Heal My Child…

I sit, praying, hoping, loving, watching…How can this disease steel so much from my child.  I find myself looking for signs of improvement…only to find that he still has signs throughout his skin and his actions.  Parker is currently in adrenal failure…barely traces of cortisol in his blood.  I watch him sleep, for his stomach to rise up and down as the bi-pap machine pressing air in and out of his lungs.  Sometimes the movement is so subtle that I feel I have to lay my hand on him…just to check, as I hold my own breath until I feel the soft rise and fall.

I look at his hand and feet…full of swelling with a mixture of red, purple, blue, grey, and white.  His vessels thick and at the surface, as if they will bust out of his skin.  Tiny bruises trickle across his neck and shoulder.  His face…beat red in one moment and pale grey in the next. 

He doesn’t really want to talk…he just wants to be left alone…to sleep and distract himself with videos.  As his Hizentra infusion flows in him, I pray that it boosts him enough to heal.
Lily (our dog) is right by his side…she knows….dogs always know.

Why does this disease try to overcome our child…he is incredibly strong, completely determined to ride through this…always hoping that JA will stop hurting. 

Today he is really dizzy.  He is still having sweats and chills.  

The emotion is in the silence… with love in my heart, please heal my child.

 

When I Was a 6th Grader...I Hated JA!

 Parker was cleaning up his laptop for high school and he came across these thoughts he wrote in 6th grade...  From the perspective of his 6th grade mind, here were some of his thoughts...

 My life with arthritis is very hard:  Living with pain every day, having to take lots different medications every day that sometimes don't even do anything. These are all things I have to deal with all day everyday living with arthritis.  Arthritis affects my life a lot… like sports.  I used to play sports every day but now i can barely ride a longboard.  Every day after school i used go to North Lakes Park to wait for my parents to pick me up.  I went there from kindergarten to 5th grade.  It’s a rec. center so it’s mainly outdoor fun but they also had a game room, a big room, and an arts and crafts room. I used to love it because it was the only place i could just run around and play.  But as I got to 4th grade and i started to get Arthritis i became less fond of the park. Ya they had the other rooms but 90% of the time they have you playing outside. Sometimes i felt good and wanted to play but as my arthritis got worse i didn't want to play because it hurt.  But the coaches sometimes force you to participate but when I'm hurting i can't play. 

So as i went on to 5th grade i had to totally stop sports due to my arthritis and i still don't play them now.  I mean every once in a while i ride my longboard and that’s the most exercise i ever get science my arthritis.  So now i mainly watch baseball on TV with my dad or watch my brother Logan longboard. 

Arthritis also affects my school life a lot.  Mainly because I'm in a WHEELCHAIR school is hard.  Its not that kids make fun of me (but some do) it’s that they think since I'm in a wheelchair i can’t walk.  So when i do walk they act like it’s a miracle.  Then when i in it they all want to push me like it’s the coolest thing in the world.  The worst part is that everybody says I'm lucky that i get pushed around in a wheelchair when there the lucky ones.  First of all the wheelchair is the most uncomfortable thing ever and you never get to control where you get to go because someone else is controlling you.  Then secondly the price i pay to even be in the wheelchair in the first place is horrible!!  (Arthritis) Now that’s just the wheelchair situation there’s lots more troubles with arthritis and school.  Like the work.  Middle school is hard enough.  Lucky for me i go to a gifted school with all advanced classes.  Then on top of that i have the arthritis.  Doing the work i can do... turning it in on time not so much.  Then add in missing 173 days in the year you wonder if I'm cheating while getting straight A's but then you realize there is nobody to cheat off if you are not in school. 

But we have found some solutions... like having an IEP. An IEP is like an agreement with your school that lets me do things that other kids don't get to do… Like turning work in late; going to the clinic to take a nap; extended time on tests and quizzes; and even having someone come to the house to tutor me.  School has been very hard and we don't know what this year holds. on all my meds i can get sick very easily so i might have to wear a mask to school.  So there’s another thing that arthritis does to affect my life.  Then you have the MILLIONS of meds i have to take, some daily, some weekly and so on and so forth.  I have so many meds that i have meds for my meds and sometimes meds for those meds.  In the morning i take 7-8 pills 1 inhaler 2 nasal sprays and liquid.  At night i take 6-7 pills i inhaler and 2 nasal sprays.  Then every 3 days i get a patch on my back changed.  Every week i get a methotrexate shot.  Last but not least i drive up to Gainesville to get a bi weekly infusion called actemera.  It is a fairly new drug made for people with systemic arthritis.  Gosh I HATE meds!